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Posted 2/5/2008 9:17 PM (GMT 0)
Hi Everyone,

My dad is still going through all of the complications.  Once in awhile he will have a good day, but overall things are not good.  He didn't end up having the TIPS done because they were able to stablize him in the hospital.  This seems to be the cycle.  He gets bad, gets admitted to the hospital, they adjust his meds, etc, and then he is sent home.

Anyway, he finally had the initial meeting at the transplant hospital.  The doctor gave him a book to read and they will contact him in the coming weeks to get all of the testing/evaluations done, etc.  During the meeting (we know because my uncle went there too) when he was asked about how much he drank he said the odd 1 or 2 beers and maybe the ocassional drink of rye.  This is completely untrue of course, which I am sure the doctor knows as well.

My concern is that something like this will effect him being placed on the transplant list.  I am not 100% sure, but I think that the psychiatrist and other members of the transplant team will bring up this issue.

I think that he is in a lot of denial about how much he has drank over the years.  In a lot of ways he would be classed as a high-functioning alcoholic.  He always went to work, etc, and his "rock bottom" has been the cirrohsis.  He hasn't drank in 9+ months, mainly because he has been so sick and sleeping a lot, he didn't have an opportunity to go and buy any alcohol. 

I have read a lot about how many people will go to AA for 6+ months before being listed.  I know that my dad will agree to go, but after his first meeting he will end up saying that he won't go back because he isn't like everyone else there.  (Dad is stubborn that way)  In many ways he isn't taking the transplant info seriously.  He thinks it will be no big deal and that he will be back at home in a week or so.  I also worry that this type of attitude will also cause more problems with the transplant team. 

They are also making an issue about a missed appointment, even after it was explained that it was a miscommunication.  He had a banding procedure done on his throat, and he was able to get in sooner at the local hospital then with the specialist in the city.  The other one was cancelled, but there is no record of it.  I don't know.  We understand this issue, but I know when dad is having a bad day, he won't/can't always make it to things.  We try our best to give notice and change the appointment if necessary.

Lately he has been having more trouble breathing.  He has stopped smoking and seems to be doing well.  My mom still smokes though, so I am not sure how much that causes problems.  It's a relief that he has quit smoking since it was becoming a hazzard with his confusion and being sleepy. 

Also, he has a hernia that he needs to get operated on.  They didn't see this as a priority the last time he was in the hospital, which was understandable, but now he is always saying how painful it is.  We're hoping his new doctor will be able to organize the right referral for that procedure. 

Any insights would be appreciated.

Thanks

 

Posted 2/7/2008 4:24 AM (GMT 0)
Hello 4boys4me, I just typed you a long response and it didn't post. Hopefully this one will. Sorry I haven't responded to you eariler but I have been under the weather for a few days.
I understand your concern about your father getting listed. It is a very long hard road for most people.
He needs a positive attitude along with being a model patient. There's going to be a lot of hoops to jump through.
My husband had to go to AA. Didn't feel he needed it as he had quit drinking on his own 2 years before. He complained to me about it but went anyways. I didn't think that he would last long either. But to my surprise he stopped complaining after about the 2nd or 3rd meeting. Then he started going 2-3 times a week. He ended up ...loving it. Who would have thunk???? So your dad just may surprise you and himself too.
Along the the no smoking rule my husband could not be around even 2nd hand smoke.
about the hernia. Most doctors aren't going to touch that yet, for fear of your dad bleeding to death. My husband suffered with gallstones for over 2 years for that reason.
Well this is a short version hope it helps. Take care...Thoughts and prayers.
Posted 2/7/2008 12:56 PM (GMT 0)
Thanks for your reply.

That is our concern about most things. It isn't easy finding out some of the information, especially about the transplant selection process. We are trying out best to help him, and I do hope that he surprises us.
Posted 2/7/2008 8:16 PM (GMT 0)

Hello, your Dad reminds me a lot of my husband when we were first going through this.  I know it's overwhelming for him at first with all the information that you get when you go through an evaluation, that's why his family will need for you to support him all the way.  When the social worker told my husband that he had to attend A.A., my husband was not happy about it at all, I actully went with him one time so he did'nt attend his first meeting alone, then after that, to my surprise, he went on his own and really enjoyed attending them.  He had the same thoughts as your Dad, I also think that they think they have to actually say something, if he doesn't want to, he doesn't have to. Then the other thing that my husband went through was counseling in addition to A.A., which really helped him a lot, he thought that was going to be awful too and he really enjoyed that as well.  So it may surprise you what the outcome actually is when they have to attend to be placed on the list.  As long as your Dad is honest about everything with the evaluation/transplant team, then there will be no problems, but he will have to quit being in denial in order for this to work for him.  He's the only one that can make that choice for himself.

As far as missed appointments, you'll just have to make sure that when you cancel or reschedule, that you write down when and who you talked with to cancel.  If he's not feeling well or having bad days, the docs should understand that and not have a problem, but a lot of times, the docs require 24-hour notice for cancelling, so try cancel if you need to in that time frame.

I agree with Pink Grandma on the hernia, if it has anything to do with bleeding, most of the time the docs will not worry too much if it's not too serious because any operations can cause them to bleed to death.  I know my husband has gallstones and they refuse to do anything about them because of the risk of bleeding.  The docs say, if it gets serious, then they will worry about them when they have too.

Just be strong, support your dad, and take care of yourself too.  That's important.  I've been going through this for two years now and believe me it can wear on you, so you have to do what you have to do for yourself also.  Take care and you're all in my thoughts and prayers.

Posted 2/8/2008 3:30 AM (GMT 0)

I just wanted to tell you everything you are going through my husband is going through as well.  We have been to Vanderbilt three times thinking he would be listed and each time they came up with another excuse that he couldn't be listed.  He went to counseling like they said for 5 months now.  Then they decided the counselor wasn't educated enough  etc etc.  My husband quit drinking on his own before way before he was diagnosed now they want him to go to AA.  So he start AA tomorrow.  He wanted to go today but had to have a paracentises again today.  He's had amonia problems also.  I've gotten really good at getting the amonia levels down.  You need to educate yourself as much as possible.  My husband can't go many places because he vomits without warning.  But we just keep doing everything they ask.  We were getting ready to change hospitals but after 6 months of getting close to getting listed he just doesn't have the strength.   So we have started a journal.  We wrote everything down that they are requiring at Vanderbilt.  I am documenting everything.  Also his counselor is.  Hopefully it will all come together.  We just keep going.   You have to do that.  Just learn everything you can and do everything you can to keep a positive attitude.  Hang in there!!!

JoAnn

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